It turns out that social media may have uses other than showing off your asparagus souffle.

A new study by a team of researchers at Toronto Eyecare collected medical data using Facebook. Presented at ARVO 2019 (Association of Research in Ophthalmology) in Vancouver, BC, the research assessed the prevalence of Ocular Graft Versus Host Disease (oGVHD), one of the possible risks of undergoing allogeneic stem cell transplantation.

Lead researcher Barbara Caffery, O.D., Ph.D., and her Toronto Eyecare reviewed responses to a query posted in a Facebook forum for patients with Graft Versus Host Disease (GVHD). Researchers heard from 584 patients in the group, who supplied to their ocular-related symptoms, a description of treatments they have received, and their opinion of the efficacy of those treatments.

A large response from Facebook

Of the 584 participants, results showed 25.5% (149) were also suffering from oGVHD. Among this group, 25 specific dry eye symptoms were reported, with 47% reporting dry eye, 22.5% reporting oGVHD and 10.8% reporting pain. Treatments were reported by 61% of the participants. While the results showed that the most common treatments were artificial tears, punctal plugs, scleral contact lenses, RESTASIS®, and autologous serum, the reportedly most successful treatments were bandage soft contact lenses (100% success rate of 9 posters), omega-3s (100% success rate of 4 posters) and scleral contact lenses (95.42% success rate of 22 posters).

oGVHD rreatments were reported by 61% of the participants

“Our research demonstrates that social media can allow us to easily reach sufferers of rare diseases such as GVHD,” said Caffery. “With social media, recruitment is not a struggle. Through our study using Facebook, we learned that these patients have problems with access to many aspects of their care, including eye care, and that our ocular GVHD are not always successful. We look forward to using questionnaires on these sites to further understand the patient experience of GVHD.”